Without her home health aide, Sooner Bell, 34, would be forced to live with her family or in a nursing home or assisted living facility.
Disabled since birth with spina bifida, a congenital neural tube defect, Bell uses a wheelchair and needs help with essentially every facet of her life — getting in and out of bed, dressing, bathing, going to the doctor's office.
Since 2006, she's used in-home care to unhook herself from daily dependence on family or institutions.
“Having a home health aide has given me a tremendous sense of freedom,” she said. “I have a lot of medical issues and I need a lot of care. This just makes me feel like I'm worth something.”
More than 3.8 million “direct-care” workers — home health aides, personal care attendants and certified nurse aides — provide close to 80 percent of all paid, long-term, hands-on care for seniors and the disabled in the nation.
Experts worry there won't be enough workers willing to take on these hard, low-paying jobs that offer few benefits, such as health insurance, and have high turnover rates.
It's estimated an additional 1.1 million, or 35 percent more, direct-care workers will be required to meet this demand by 2018, when caregivers in the home will outnumber those who work in facilities by nearly two to one.
That represents a 52 percent increase in direct-care workers compared to 1998.
Several trends will drive this demand — an aging populace, advances that keep those with chronic conditions living longer and continuing efforts to keep people out of more expensive nursing homes.
Home health aides must demonstrate a certain level of training in basic nursing skills in addition to providing mundane daily living tasks. Personal care aides provide largely unskilled services such as meal preparation, bathing and cleaning. Both work in clients' homes.
In Texas, most direct-care service is provided by government-funded Medicaid programs.
Given the state's low Medicaid reimbursement rate of $9 to $10 an hour, agencies pass that austerity along in the form of low wages. Medicare typically doesn't cover personal care attendants or home health aides unless skilled nursing also is required; private insurance often doesn't cover such care. Families that can afford to tend to purchase such help on their own.
“These are the fastest-growing jobs in the nation, but they're really poor-quality jobs,” said Deane Beebe, spokeswoman for Paraprofessional Health Care Institute, or PHI, an advocacy group for direct-care workers. “What concerns us is that the quality of the care dispensed can really be impacted negatively by quality of the job.”
In addition to being low-paid, direct-care jobs often can involve physically and emotionally demanding work with a frail, vulnerable and challenging population, she added.
Since March, Bell has depended on Maria Mullenax, a home health aide she hired through a local home health agency who works for her 36 hours a week for $261 and is paid for by Medicaid,
She cooks Bell's meals, cleans her house, shops for groceries, takes out the trash.
Perhaps more important, she provides regular companionship, a listening ear, a loving touch.
For Mullenax, 29, who discovered her love of care giving at 15 when she helped tend to an ill grandmother, her current job provides many intangible benefits. She relishes the hands-on care she can provide Bell, and the fact they've developed a close, companionable relationship.
It's the tangibles that are problematic.
She only makes $7.25 an hour — she could get that flipping burgers —and she lacks health insurance for herself and her three children. She has to work holidays. She gets no vacation.
“And if Sooner should get sick and have to go into the hospital for any amount of time, I basically won't have a job” during that time, said Mullenax, who has a high school diploma but is working on an online medical assistant degree.
Still, she loves her work, even the somewhat unpleasant or arduous parts, she said.
Not all direct-care workers are as dedicated, said Halbert Brown, who runs Universal Nursing Services of Texas, one of the some 400 home and community support agencies in San Antonio and 5,000 in Texas.
“The old adage that you get what you pay for is true for a lot of cases,” said Brown, who employs about 60 workers and is constantly having to recruit and hire. “Many people who (apply for a direct-care job) have heard that this is a job where you just get to sit around all day and watch soap operas. Then they find out they actually have to work. Some of them just leave. It's a continual human resource nightmare, basically.”
If he could pay his direct-care workers “even $12 or $15 an hour, then I wouldn't have a turnover problem,” Brown said.
And then there's the problem of workers who abuse, neglect or steal from their clients.
Recently in San Antonio, a paid in-home caregiver of an 82-year-old man was found to have allegedly bilked her client out of more than $30,000. Police completed their investigation and have referred the case to the district attorney's office for prosecution.
For the most part, safeguards are built into the system.
Home health agencies are licensed and monitored by the state, said Cecilia Fedorov, spokeswoman of the Department of Aging and Disability Services.
A plethora of regulations govern their operations, including the requirement to perform criminal background checks and other employee misconduct registry searches before hiring a direct-care applicant. Infractions are investigated and penalized. Still, Brown said, the unsavory can slip through. (It's unclear if the caregiver in the recent alleged theft case worked for an agency.)
Agencies must test home health aides in basic nursing skills and provide any additional necessary training; personal care attendants must prove they are competent in providing basic “activities of daily living” for clients before being placed in client homes. Most agencies require a high school diploma or GED of prospective direct-care employees.
Some consumers or their families opt to bypass agencies altogether, finding in-home workers on their own via the Internet or other search methods — a strategy fraught with danger, said industry experts: Without agency safeguards, it's hard to know exactly who you're welcoming into your or your loved one's home.
But the newest nationwide trend involves “consumer directed services” — programs in which individuals hire, train, set the pay for and schedule their own direct-care workers.
In Texas, users of state-funded consumer directed services report that going this route, instead of relying on agencies, allows them more freedom and satisfaction, Fedorov said.
Even with consumer-directed services, clients still get help from specific agencies when it comes to paying employer taxes, conducting background checks and handling other issues.
Such services give consumers a greater degree of autonomy in how they receive home-centered care but with the added protection an agency can provide, Fedorov said.
But Steven Edelstein, national policy director of PHI, said more revolutionary changes are necessary if the nation is to handle the coming tidal wave of need for direct-care workers.
“We don't want to think about aging and disability, but so many families are already struggling with this right now,” he said. “People are just doing what they can for their loved ones, but we need to look at direct-care as a larger public policy issue. This impacts such a huge percentage of the population.”
By Melissa Fletcher Stoeltje